True confession time

Lung Cancer is nasty. While I was working hard with all my advocacy and community building, trying to make my little part of the lung cancer world a little better, lung cancer snuck up on me and outsmarted the drug I was taking.

I really liked the targeted therapy drug I was taking, and I was disappointed it didn’t work longer for me. Some people get a lot longer than I did. I have to be honest, I was hoping for three years or even more. I got one year and eight months.

So at the end of the Summer when I was feeling tired, and when the kids were going back to school and I was exhausted. That was the cancer. I was coughing a bit and I kept telling myself it was because we were swimming in chlorinated pools, but it was the cancer.

I’m thankful for my oncologist, and the fact that he makes me have CT scans even though I don’t like them. I’m thankful that he keeps on top of latest developments, new drugs and how to gain access to them. That can be tricky for cancer patients.

I can’t tell you how thankful I am that there was another drug I could jump to. It’s called Lorlatinib, I’m getting it free from the pharmaceutical company, and so far it’s working well with limited side effects. What a great gift!

I’m feeling really well! I’m relieved and grateful.

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I’m beyond thankful for another extension on my life. That’s what these amazing drugs do for me. They let me live longer, give me the opportunity to be there for my kids, my husband, and all the other important people in my life.

That’s why research means so much. Every new drug developed gives me and other survivors like me the gift of life for a little longer… another few months or years to share with our friends and family, a chance to see our kids grow a little taller or perhaps even graduate.

My oldest son was 12 years old when I was diagnosed, and I’m so happy that I’m alive to see him reach grade 12! The past two Saturdays I got to tour local Universities with him, hang out with him and help him as he decides where to go and what to study next year. With this new drug, I’m really hopeful I’ll get to see him attend University!

I know many of you have given to Lung Cancer Research. Thank you. You are making a life and death difference for people like me, for families like mine, not to mention our friends and communities. You are giving the gift of life for a little longer, the gift of opportunity for moments and memories, a gift that is precious and treasured. Thank you.

Onwards to a cure!

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PS: November is Lung Cancer Awareness Month.

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2017: Grief and Hope

We’re grieving some disappointing news we received a couple of weeks ago.

My CT scan in January showed cancer. Ugh. This means the med I was on for almost two years is no longer working effectively.

Thankfully, this is not the end of the line: many new meds are being developed, and there were a couple of options for me to consider. The best option, we think, is a new drug which is only very recently available to certain cancer patients here in Canada. Good news that I fit the criteria. Good news that the timing worked out for me. Good news that the company agreed to release it to me on compassionate grounds. Good news that we don’t have to pay for it.

Yet, in the midst of all this good news … still the grief.

Naturally we hoped I’d have a longer run on Ceritinib. I had even started hoping that “cancer” would become a thing of the past, that we would turn the page and start a new chapter which didn’t include cancer. That in future there would be chapters which didn’t include daily meds, side effects, frequent appointments and tests. Maybe even one day cancer would be beaten! That day will come, but I don’t yet see signs of its coming.

The reality is that we don’t know the whole story. We can’t see the BIG picture. We have no idea what the future holds.

Thankfully I got the tests I needed quickly. Thankfully my oncologist worked late to fill out forms requesting the new drug for me. Mercifully it came surprisingly quickly. Thankfully I’ve been taking it for a week now and things seem to be going fairly well.

In the midst of disappointment, I keep praying to have my eyes and ears open. I keep looking for reasons to give thanks. I keep trying to discipline myself to stay in the present and live each day faithfully.

It’s hard to write this update. I don’t want to have to share bad news. I know you don’t want to hear it. I was blindsided by this news, and it hit hard. Surprisingly hard.  I’m still working through the grief. I started this post a few days ago, and I don’t even want to read it over to check my spelling & grammar. So I’m not going to! (I’m such a rebel!)

In the midst of this difficult news, there is good. There is hope.

Hope is the theme I’m focussing on for 2017. I chose it toward the end of 2016, and had no idea how much I would need it! One of the ways I am focussing on “Hope” is by regularly reading passages from the Bible which speak to this topic, and spending time reflecting and praying about them.

I recently read 1 Kings 19, which tells about the time the prophet Elijah was exhausted and fearful since his life was in danger, and he met with the LORD God. The LORD asked him twice, “What are you doing here, Elijah?” It’s a beautiful encounter in which the powerful God whispers to Elijah. Elijah learns that the story is bigger than what he perceives, and that the LORD has a good plan which includes Elijah. It reminded me that the Living God knows my name and all about my situation. Here is a prayer I wrote in in response:

Lord, thank you that we can come to you with the whole story, as we know it. You invite us to speak, to tell it to you. You listen and care for us. You are powerful & show your power … and you are gentle & show your gentleness.

You are more powerful than our enemies. You know our name. You know our need. You tenderly care for us. You give us a role to play in your Great story. You gently open our eyes and ears to know that the story as we know it is not actually the whole story. Thank you.

(If you’re interested in reading this passage, you can find it here: http://bible.oremus.org. Search 1 Kings 19)

Cancer is not the whole story. Leaving the clinical trial and switching from Ceritinib to Alectinib right now is not necessarily all bad. There may be good in it that I can’t perceive. Certainly the side effects so far seem much easier to tolerate, and for that I am thankful!

I’m praying for courage to boldly step into God’s Great story.

Prayers, warm thoughts, and words of encouragement are always appreciated.

Here are some glimpses of love, light and goodness from the past couple of weeks:

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The hibiscus plant is blooming again (and again)!

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I managed to root jasmine and geranium last Fall, and they’re starting to bloom!

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My first lemons are looking luscious!

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Homemade heart-shaped biscuits with our broccoli soup last night!

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I set foot on the world’s longest skating rink (wearing a cozy hat made by the sister of one of my favourite clinical trial nurses)!

 

In Ontario, cancer medications given in hospital (like IV chemotherapy) are provided free of charge, however cancer drugs that we take at home (like effective new pills) are often paid for by the patient. Sometimes they cost thousands of dollars per month. Many cancer patients face significant financial fragility, and should not have to pay for their treatment medication. The Canadian Cancer Society is making it easy to speak out against this unfair situation. If you are an Ontario resident, please consider taking action! Click here to contact your MPP about this important issue!

 

So Much Beauty – Even in November

IMG_2732November has never been my favourite month. Around here most of the leaves have fallen, days are shorter, and the world tends to look dull and grey. There is beauty, though, if one has eyes to see: so much beauty, even in November.

This has been a strange month, with my computer away for repairs, then a bad cold which turned into pneumonia (from which I’m still recovering), but just as I was about to go to bed I realized that I hadn’t posted all month … so here are a quick couple of thoughts before it’s December …

This morning I saw a woman at church who looked familiar, but my fuzzy brain couldn’t place her. I thought I might know where I knew her from, but perhaps she didn’t hear what I’d suggested or maybe I’d misspoken … We looked at each other and chatted, trying to figure it out together until finally she remembered with certainty, and so did I. She looked different to me, with that hat she was wearing and being out of context and all, but it wasn’t until this evening that I realized I look very different now myself.

My children are a couple of years older, much bigger, and more mature (most of the time!). My hair is much darker now, with small silver streaks, and quite curly (!) in recent months. I tend to move more slowly, stiffly, and navigate stairs with difficulty. I lean or slouch more when I sit, and standing up after sitting for a while takes determination! Today was a tough day: I was very tired and my joints hurt. For a few moments I didn’t think I’d be able to put my jacket on after church because my shoulders were so stiff and sore. I have not regained much of the muscle mass I had lost, in spite of my hard work: so often it seems like one step forward, two steps back. My body is still quite puffy from steroids and chemo, and when I looked in the mirror I realized it’d be easy to not recognize me, especially if it had been more than a year.

Inwardly I’ve changed too … living more in the present rather than the future, learning to look more intently and appreciatively, and greatly increasing the proportion of prayer time spent in thanksgiving. I was always so active and busy multi-tasking. Now I’m slow and learning to be more prayerful. I’m trying to listen more for what to pray about, and I think I’m growing in this – praise God. These inward changes are more important to me than the outward ones, and I am so grateful for the beauty of these good gifts.

I say with the apostle Paul (2 Corinthians 4), “Though my outer person is decaying, my inner person is being renewed day by day.” I know this is by the grace and power of God, and I give thanks!

How are you changing – both outwardly and inwardly? Do you have eyes to see beauty even in the midst of difficult times? What could you give thanks for right now?

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